Advice on Getting a Better Machine from my DME?

Good Morining, forum!

I want a better machine, one that assures me that my AHI is near zero. Can you give me suggestions on how to do it?

Some background information: I received my mask and machine from my Pulmonary doctor's office on March 8. They didn't discuss the choice of either the machine or the mask with me, and although I'm doing OK with my ComfortGel, I think it's really strange that I didn't have any input other than, "what did you wear during your titration study?" At the time, I was so anxious to start therapy that although I had my heart set on a "smart" machine, I was just happy to be going home with one.

So, with the help of this forum, I've learned how to insulate and hang the hose, adjust the mask, and all sorts of other things to get me through the night. Am I feeling better? Not really. Could be sleep debt - but how am I supposed to know if it is sleep debt or if I'm still having hypopneas? During my PSG, I had an AHI of 46, with more hypopneas than apneas. Each had a maximum of over 60 seconds, and my oxygen dipped to 70%. So I qualify as "severe apnea".

My titration pressure was 10 cmH2O, and that's what my machine is set to. But it's nagging at me - how do I know that's always getting air through? I don't snore anymore (thank GOD), but you wouldn't have to snore during a hypopnea, would you?

My husband (LOVE that man) said we could buy a better machine out of pocket, but I would think that there might be other options. My Pulmonary guy set an appointment at the six week mark - that seems strangely long for an assessment. Is there a 30-day exchange period, or any time limits like that? Should I call my Pulmonary guy and express my concerns, and if I do, what strategy do you think would convince him to order me a machine with software?

I could go on and on with my questions about this, but I'm sure you get the drift. I'd really appreciate your help with this. Thanks in advance.

Cathy

Cathy,

Ok, I'm a novice too, but let me give my first shot at helping another hose head!

From what I can tell, your machine has data recording capability. There should be a smart card in the back of the machine. If so, that means you can get data out of it that can tell you (or your doctor) how many hypopneas and apneas you're experiencing.

I went ahead and bought the Encore Pro software and a smart card reader. You can order both from cpap.com It's fairly easy to install on the computer, and there are some good step-by-step instructions on this forum. Since Encore Pro is really designed to be used in a doctor's office, you may want to also download a program like Encore Pro Analyzer that makes interpreting the data much more user friendly. (Encore Pro Analyzer is written for the M series machines such as yours. Do a search here for the download information. It's free.)

All of this is to say that you may not need a new machine. The one you have is a good one. It sounds like you really need access to more information about your treatment. The software and card reader are much less expensive than a new machine, and you'll still need them to get the information out of any machine you buy.

I'm something of a techno-geek, so I enjoy downloading the information from my smart card every morning.

Hope this helps.

Jeff

The machine listed in your profile does have recording capabilities with an add on smart card module, however it will only record basic compliance (ie. hours you use the machine). I have not dealt with a DME at all (my equipment is provided by the VA), but you will probably have a fight on your hands to get anything more than what you have in a machine. You can probably be sure that they will not provide you with the software, expect to order it online out of pocket. Depending on how hard you want to fight, bite the bullet and order it out of pocket on-line. The M series PRO will record nightly statistics.
This link has all you need.

https://www.cpap.com/productpage-bundle ... undle.html

Don't buy the card and reader for that machine. It only records compliance data. Wasting your money. You already know how many hours you used the machine by looking at your clock. If you want data you need to get them to upgrade to a machine that records "useful" data.

You need also to quickly determine how much you are paying for this machine.
Is it a rental or a purchase?
If it is a rental determine your total expected cost before you own it.

If it is more than $514 you might consider giving it back after getting your prescription from the doc and ordering online. If it will be less to continue this rental to purchase time or significantly less then you might want to push for an upgrade to an M series Pro so you can get data. But either way if you are paying a significant amount of money for this basic machine, consider returning it before the next month's rent is due.

You should probably be able to keep the humidifier if you have one which will probably fit a new m pro since it is the same series and of machine.

The main problem is people don't research before they walk out the door with a machine and just take what is given. Then it becomes much more difficult (but not impossible) to get an upgrade. You are in a somewhat decent position as you have had the machine less than a month. If it is a rental and you want to return it you are only out one month's rent.

Never mind an appointment. Bundle up your machine and take it back to your sleep lab.

Ask them HOW they expect to monitor your therapy and how you are doing, if your pressure(s) need to be adjusted, etc. since this machine is NOT capable of providing any data other than compliance. Insist that you be given a fully data capable machine or your script so that you can take the script to someplace that WILL give you an ADEQUATE machine that will provide the NECESSARY information to PROPERLY monitor your therapy and response.

You are doing your part in complying w/CPAP use, you expect that your doctor will do HIS part by monitoring your therapy data. If you doctor is interested in nothing more than compliance then you need a BETTER, MORE INTERESTED doctor.

With just one month on this machine its not going to be expensive for you to get out from under it and get a fully data capable machine.

The insurance code is the same for a bare-bones, compliance only machine as it is for a fully data capable CPAP, including an AutoPAP. Don't let them buffalo you on that one.

You can expect a hassle if you want an AutoPAP as they are considerably more expensive than a full data capable straight CPAP. And it might not be worth the battle. BUT - you have a RIGHT to a fully data capable CPAP any any doctor not interested in your therapy data except compliance isn't worth the time of day much less an office call.

I'm with Slinky 100% on this. I'm still learning and had no idea that some machines would record only the useless compliance data!

I was very very polite, but also unyielding with my DME and was successful in getting the REMstar M series Auto which is a great machine. Even after agreeing to give me the machine I wanted they delivered something different. When I noticed this, they just "happened" to have one of the machines I wanted out in the car.

You're going to be using this machine for five years or more. You need to be getting good information so that you and your doctor can monitor your therapy.

Jeff

Did you sign a contract for the machine? If so, what did it say? Is your insurance paying for all or part of it? If they are will they let you get it somewhere else? Some plans have an "out of network" option for DME that reimburses a lower percentage but could still end up cheaper for you.

I'm not completely sure but I think that if your doctor is selling you the equipment they have to give you the option of getting it somewhere else. Still, I guess you could alienate your doctor if you switched suppliers.

I'm trying to figure out how to accomplish the same thing with my DME by the way but I may have left it too late. Definately do this now if you're going to do it.

As said, you need to be Nice but Firm. Don't take no for an answer. You shouldn't have to purchase another machine out-of-pocket.

Since you already have the M series humidifier, you should try to get an M Series Pro or Auto (with the Auto being the better of the two). Here are a few suggestions on getting a better machine:

If you start on a cpap, and complain, complain, complain, it might be easier to get an auto. (it's unfortunate that we have to manipulate others to get what we want/need/deserve). Complaints should be to your doctor - the DME and insurance will have to follow his instructions.
Complaints might be:

Too much pressure.
Too little pressure.
Air in stomach.
Can't breath.
Feel worse than before.

Keep bugging them. The squeaky wheel gets the grease.

MidnightOwl, it's not too late. Some of our forum members have had their machines switched after 6 months. Start complaining now.

Thanks for your help so far. I called my Sleep Doctor, and talked to the technician that issued my mask and machine. I was flabbergasted when she told me that the only CPAP machine they stock is the DS100, so that's the only one they dispense!! She didn't even seem aware that there were data logging machines out there. I tried to sound innocent and friendly, like "why wouldn't someone want to know whether or not their treatment was working?", and "Is there a price limit imposed by the insurance companies?", and "How does the doctor determine whether or not the pressure continues to be right as time goes by?", etc.

The technician just placated my by saying that they are "all good questions for the doctor", but didn't think I'd be able to exchange my machine because my insurance company was already billed for the DS100. She made an appointment for me for April 5th. (Still under the 30 days, if that makes a difference...)

So what do I do now? Call the insurance company and tell them not to pay? (HaHaHa) Call my internist and ask him tell him not to send anyone else to this doctor without arming them with foreknowledge?

Thanks again for your suggestions!

Cathy

Did you have the feeling that one of your legs was getting longer?

I'd suggest calling your insurance provider and trying to get the straight scoop from them.

THEN take a look at your options.

Den

Cathy.....

If I were you, I'd make a list of exactly and precisely what equipment I want (including model and part numbers).

Then, I'd make a list of exactly what equipment I already have...that I DON'T WANT to keep.

Then I'd start nicely raising hell with the doctor....and nicely demand that he help me get what I want......and help me DUMP what I don't want.

If your doctor doesn't want to help you, RUN... don't walk..... to another doctor who will. Take your business elsewhere......just like you'd do if the place where you purchase groceries was selling sub-standard food.

A grocery store that won't take back sub-standard food is not the place for you. You want to shop at a place with a guarantee of quality. If you purchase a nice looking ham at your favorite grocery store.....pop it in the oven......cook it "just right"....and find that it's full of gristle.....or discover that it doesn't taste right....I'm betting that they'll give you your money back...along with an apology for selling something so crappy. They want to keep your business....and they'll do the right thing by refunding your bucks....or giving you another ham.

Most of "Health Insurance" is actually a pre-payment scheme...with a little true insurance thrown in. You've already paid for what you want and need. They already have your money.....and they want to keep as much of it as they can get away with.

If you deal with the underlings, they'll run you in circles.....until they tire you out. Start at the top.....with your doctor. And don't be "dazzled" by the guy....he puts his drawers on with one leg at a time....just like you do.

Go for it.....You CAN do it.

Den, I wondered why I was walking funny! Thanks for the suggestion, here's the note I sent to the insurance company, I will hope for the best. Thanks for your help.

Subject: Sleep Apnea CPAP Machine
I received a Respironics DS100 CPAP machine on 3/8/07, to treat my sleep diagnosis of severe apnea. My understanding is that this is a lifetime condition, and that I will need to use this machine every night for the rest of my life. My concern is that there is no way of knowing if this machine is adequately treating my apnea. This machine does not log any data except hours of usage and pressure. How can I know for sure that I am not still having apneas or hypopneas?

For a small amount of additional money, Respironics makes a CPAP machine (M Series Pro C-Flex CPAP) that records data including pressure profiles, number of minutes at a specific pressure level as well as the occurrence of flow-limitation events like snores, hypopneas or apneas. It can also tell you the number of days the CPCP was used, average pressure, flow-limitation events and average mask leak - even what percentage of a nights sleep was spent at a given pressure.

I want to take monitor my own treatment, and wonder why anyone wouldn't. To me it is the equivalent of giving someone insulin shots without monitoring his/her blood sugar.

My question is this: can I exchange my DS100 machine for a M-Series Pro? I have only used the DS100 for 20 days. I am still very fatigued, and cannot tell if it is because of slow recovery or LACK of recovery! With the data, the Pulmonary doctor can analyze my treatment also. Without the data, he needs another sleep study, at $1700! It will quickly be cost effective to upgrade the CPAP machine.

Thank you for your consideration, and I sincerely hope you can grant me permission to upgrade to the M Series Pro. If it is permissible, I can buy it on-line for $514, and the software bundle for $179.

Regards,

Gerald, our replies crossed. Thanks for your support, I think I will ditch this doctor, once I can get a "smart" machine. The people on this forum seem to know a LOT more than he does, anyway...

One more suggestion.

Call the insurance company on the phone now. Verify that is truly was a purchase and not a rental.

That may make all the difference.

And yes you said Ha Ha about call the insurance co and tell them not to pay.

Don't laugh. I would seriously consider dong just that right now and get a fax number where you can send a followup letter saying the same thing. 20 days is not very long. Very likley insurance has not processed the payment yet and my be able to help negotiate a more appropriate machine.